q for those who've had crisis
 

Hi, for those who have had a myasthenic crisis, I want to know: did you have any time to let the doc know stuff before you were admitted and treated? Did it go gradually, like getting worse in hours/days, or was it more acute so you wouldn't be able to communicate anymore?

Reason for me wanting to know, is I talked to my doc never wanting to get prednison as a treatment in crisis, since I've experienced prednisone psychosis at relatively low dosage, at least half of what people in crisis get.

However, no one can assure me it will not be given, since it is often the protocol where I live, and in live/death situations they just do it.
So, do you think there is time to let the docs know when you're in crisis, or is this not going to be possible.

It should be in your chart that you can't take it just like if your allergic to certain meds but then again if the e.r. doc thinks the benefits out weigh the risks.I think I remember seeing a med bracelet that can state that you can't take it. Hope this helps.

I have not had a crisis...YET. However I will relate to you my recent experience.

I went to hospital to have blood taken to check for heart problems, as I am now having constant chest pain. I generally find Hospitals and needles and white coats stressful, but I have gotten used to them over the last 2 years.

Blood test went ok. I even felt ok, and thought that I would be able to walk out the hospital. However, within 20m my legs gave way, and my breathing started heading for hyperventilation. Before I fell I sat, in the main corridor in a busy hospital. Passing staff recognised that something was up, and found a chair for me to sit on. So far so good.

Then, I presume following their protocols, they found a bed on wheels and laid me flat on it. Breathing almost stopped. At that point I was trying to tell them to sit me up, but I had barely any breath, they must have panicked, because the next thing I knew was that a resus team was there.

It took a good 10 minutes for them all to realise that I NEEDED to sit up but to be supported.

This was not a crisis... but I went from walking talking, to being immobile fighting for breath with a resus team around me in less than 15 minutes.

There was no time to check records. I was unable to make them understand anything. So I am now looking for a Medic Alert bracelet. The first thing that Medics do is check your pulse so I am hoping that if they find an SOS bracelet there, they might just read what is on it.

I advise you and anyone else to do the same.

Mine was gradual, but I don't think that's typical. Jim

When i crashed - it was gradually getting worse for weeks and then there was a 3 day period where I went down... I was able to get to the dr's office and they admitted me there (my first admit and first round of IVIG).. it is a miracle drug

Smart phone can help communicate
 

My smart phone has emergency dialing as well as an emergency information screen that anyone can see, they do not need a pass code to see.

Emergency responders are being trained to look for this emergency information on smart phones.

In this area you can give information stating that you have MG, do not make me lie down, use resuscitation bag to assist breathing until hospital, your doctors name, medications, emergency contact person, etc.

if all you can do is seek this screen on your phone and hand it to someone, it will assist you to get the proper help. Also if family members know you have this detailed information on your phone (who doesn't have their phone on them these days), then they can make sure emergency responders read the screen.

I hope this is helpful information for you.

Interesting. I will go and check on my smartphone to see if that option is available.

Smart phone
 

If it is a product named after a fruit, there should be an ap icon that is white with a red heart on it. The ap collects health data, etc. but then there is an area in the ap called "medical ID"
Once you put your information in there, then there will be a "medical ID" on the emergency dial screen that people can access.

LOL... no mine is named after a Space time rift in Star Trek... not an orange!

I decided to go with an armband, as the smartphone can be detached from me, whereas my left arm will ALWAYS be checked, for pulse.